135: An Interview With Taylor Kane, Founder and Executive Director of 'Remember the Girls'

Afleveringen

141: An Interview WIth Steve Van Wormer, Cofounder and Director of the Phaware Global Association
21 okt· Rare Care Podcast
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Steve Van Wormer, cofounder and director of the Phaware Global Association. Van Wormer became a patient advocate after his late son, Lucas, was diagnosed with pulmonary hypertension at age 4.
- Luisteren Nogmaals beluisteren Doorgaan Wordt afgespeeld...
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140: An Interview With Victor Test, MD, Chair of the Pulmonary Vascular Disease Program at Texas Tech School of Medicine in Lubbock
16 okt· Rare Care Podcast
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Victor Test, MD, an expert in pulmonary arterial hypertension (PAH). Dr. Test is a professor of medicine and chair of the pulmonary vascular disease program at Texas Tech School of Medicine in Lubbock.
- Luisteren Nogmaals beluisteren Doorgaan Wordt afgespeeld...
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139: An Interview With Drew Harris, MD, Expert on Black Lung Disease
9 okt· Rare Care Podcast
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews pulmonologist Drew Harris, MD, an associate professor of medicine at the University of Virginia in Charlottesville. Dr. Harris is also medical director of the Black Lung Program at Stone Mountain Health Services, in the heart of southwestern Virginia's coal-mining industry.
- Luisteren Nogmaals beluisteren Doorgaan Wordt afgespeeld...
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138: An Interview With Mahesh Desai, PhD, of the Luxembourg Institute of Health
25 sep· Rare Care Podcast
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Mahesh Desai, PhD, of the Luxembourg Institute of Health’s Department of Infection and Immunity. Dr. Desai discusses how healthy gut bacteria may reduce the side effects of chemotherapy in cancer patients.
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137: An Interview With Karin Hoelzer, DVM, PhD, Senior Director of Policy and Regulatory Affairs at NORD
18 sep· Rare Care Podcast
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Karin Hoelzer, DVM, PhD, senior director of policy and regulatory affairs at the National Organization for Rare Disorders (NORD). Dr. Hoelzer discusses the importance of convincing the US Congress to renew the Rare Pediatric Disease Priority Review Voucher Program, which is set to expire on September 30, 2024.
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136: An Interview With Susan Ward, PhD, Founder and Executive Director of the Collaborative Trajectory Analysis Project (cTAP)
28 aug· Rare Care Podcast
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Susan Ward, PhD, founder and executive director of the Collaborative Trajectory Analysis Project (cTAP), which seeks to broaden patient eligibility for clinical trials in Duchenne muscular dystrophy.
- Luisteren Nogmaals beluisteren Doorgaan Wordt afgespeeld...
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135: An Interview With Taylor Kane, Founder and Executive Director of 'Remember the Girls'
19 aug· Rare Care Podcast
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Taylor Kane, founder and executive director of 'Remember the Girls.' The charity advocates for female carriers of X-linked rare disorders including Duchenne muscular dystrophy and hemophilia.
- Luisteren Nogmaals beluisteren Doorgaan Wordt afgespeeld...
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134: An Interview With Dr. Jeffrey A. Cohen of the Cleveland Clinic on Cellular Therapies for MS
15 aug· Rare Care Podcast
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews neurologist Jeffrey A. Cohen, MD, of Ohio's Cleveland Clinic on the latest developments in cellular therapies to treat multiple sclerosis.
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133: An Interview With Maureen Juip, Secretary of the Friedreich's Ataxia Research Alliance and Mother of 2 Children With FA
5 aug· Rare Care Podcast
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133: An Interview With Jacquelyn Bainbridge, DPharm, of the University of Colorado, on Cannabis Therapy for MS
1 aug· Rare Care Podcast
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jacquelyn Bainbridge, DPharm, a neurology professor at the University of Colorado in Aurora, on the benefits of medical cannabis in treating multiple sclerosis.
- Luisteren Nogmaals beluisteren Doorgaan Wordt afgespeeld...
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132: An Interview With Michelle C. Werner, CEO of Alltrna
25 jul· Rare Care Podcast
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131: An Interview With Dr. Flavia Nelson of the University of Miami on Treatment Options for NMOSD
17 jul· Rare Care Podcast
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Flavia Nelson, MD, director of the Multiple Sclerosis Center of Excellence at the University of Miami in Florida, on the difficulties of diagnosing neuromyelitis optica spectrum disorder.
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130: An Interview With Kevin M. Flanigan, MD, Director of the Center for Gene Therapy at Nationwide Children's Hospital in Columbus, Ohio
11 jul· Rare Care Podcast
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Kevin M. Flanigan, MD, director of the Center for Gene Therapy at the Abigail Wexner Research Instute of Nationwide Children’s Hospital in Columbus, Ohio. The subject of our talk is exon skipping therapies for Duchenne muscular dystrophy.
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129: An Interview With Durresamin Khan, Pakistani Mother of a Boy With Duchenne Muscular Dystrophy
1 jul· Rare Care Podcast
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Durresamin Khan, the Pakistani mother of a boy with Duchenne muscular dystrophy, about the difficulties of obtaining treatment for DMD patients who are ineligible for gene therapy.
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128: An Interview With Jenny Huang, Mother of SMA Patient and MIT Math Whiz Benjamin Lou
27 jun· Rare Care Podcast
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jenny Huang, whose son, Benjamin Lou, is an award-winning math major at MIT who also has spinal muscular atrophy.
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127: An Interview With Omer Abdul Hamid, MD, of Nemours Children's Hospital in Orlando, Florida
18 jun· Rare Care Podcast
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Omer Abdul Hamid, MD, a neurologist at Nemours Children's Hospital in Orlando, Florida, on gene therapy's potential to treat Duchenne muscular dystrophy.
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126: An Interview With Pamela Gavin, New CEO of the National Organization for Rare Disorders (NORD)
10 jun· Rare Care Podcast
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Pamela Gavin, the newly appointed CEO of the National Organization for Rare Disorders (NORD).
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125: An Interview With Patricia Weltin, Founder and CEO of Beyond The Diagnosis
3 jun· Rare Care Podcast
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Patricia Weltin,founder and CEO of Beyond the Diagnosis—a nonprofit that uses art to raise public awareness of children with ultra-rare diseases.
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125: An Interview With Sarah Glass, PhD, of the n-Lorem Foundation
30 mei· Rare Care Podcast
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Sarah Glass, PhD, chief operating officer of the n-Lorem Foundation—and the mother of a boy with an ultra-rare disease.
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124: An Interview with Dimitrios Karussis, MD, PhD, on Stem Cell Therapy for Multiple Sclerosis
28 mei· Rare Care Podcast
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Laat meer zien

Afleveringen

141: An Interview WIth Steve Van Wormer, Cofounder and Director of the Phaware Global Association

140: An Interview With Victor Test, MD, Chair of the Pulmonary Vascular Disease Program at Texas Tech School of Medicine in Lubbock

139: An Interview With Drew Harris, MD, Expert on Black Lung Disease

138: An Interview With Mahesh Desai, PhD, of the Luxembourg Institute of Health

137: An Interview With Karin Hoelzer, DVM, PhD, Senior Director of Policy and Regulatory Affairs at NORD

136: An Interview With Susan Ward, PhD, Founder and Executive Director of the Collaborative Trajectory Analysis Project (cTAP)

134: An Interview With Dr. Jeffrey A. Cohen of the Cleveland Clinic on Cellular Therapies for MS

133: An Interview With Maureen Juip, Secretary of the Friedreich's Ataxia Research Alliance and Mother of 2 Children With FA

133: An Interview With Jacquelyn Bainbridge, DPharm, of the University of Colorado, on Cannabis Therapy for MS

132: An Interview With Michelle C. Werner, CEO of Alltrna

131: An Interview With Dr. Flavia Nelson of the University of Miami on Treatment Options for NMOSD

130: An Interview With Kevin M. Flanigan, MD, Director of the Center for Gene Therapy at Nationwide Children's Hospital in Columbus, Ohio

129: An Interview With Durresamin Khan, Pakistani Mother of a Boy With Duchenne Muscular Dystrophy

128: An Interview With Jenny Huang, Mother of SMA Patient and MIT Math Whiz Benjamin Lou

127: An Interview With Omer Abdul Hamid, MD, of Nemours Children's Hospital in Orlando, Florida

126: An Interview With Pamela Gavin, New CEO of the National Organization for Rare Disorders (NORD)

125: An Interview With Patricia Weltin, Founder and CEO of Beyond The Diagnosis

125: An Interview With Sarah Glass, PhD, of the n-Lorem Foundation

124: An Interview with Dimitrios Karussis, MD, PhD, on Stem Cell Therapy for Multiple Sclerosis